Implants and Active kids

[ashleysmommy]

I am curious. How well do the magnets stay on very active kids. Ashley is never still. I have a hard time keeping her glasses on so I am imagining this won't be easy either. I happened to think of this while we were playing today and she almost turned a flip by herself.

 

[Isaacsmom]

Isaac has only been "turned on" since October 20th, but already I feel like I have put the magnet back on his head a million times. He is a typical boy who loves to run and jump and play. He is just learning how to do a somersault (with assistance of course...he isn't 2 years old yet). The thing is...it is no biggie. You just see that the magnet is off and you put it back on. We tried to use the bodyworn processor with the behind the ear microphone and it gave us nothing but trouble. It was way to cumbersome. We use the BTE and a longer coil and pin the pouch my mom made on Isaac's shoulder. Cloggy reccommended this and it works out much better. We only have to worry about the coil now. The microphone is securely fastened to Isaac's shoulder. That works out best for Isaac. The times we have the most problems with the coil staying attached is in car seats and high chairs. But you learn to adapt. After only 3 months of hearing, Isaac will hold his coil when it falls off his head and run over to me and stand still until I put it back on. He knows he can't hear without it. That is amazing to me. I know that people may have different experiences, but believe me when I tell you, Isaac has been walking since 10 months old and he went straight from walking to running. He is a bundle of energy.

 

[Victorias mom]

Isaac has only been "turned on" since October 20th, but already I feel like I have put the magnet back on his head a million times. He is a typical boy who loves to run and jump and play. He is just learning how to do a somersault (with assistance of course...he isn't 2 years old yet). The thing is...it is no biggie. You just see that the magnet is off and you put it back on. We tried to use the bodyworn processor with the behind the ear microphone and it gave us nothing but trouble. It was way to cumbersome. We use the BTE and a longer coil and pin the pouch my mom made on Isaac's shoulder. Cloggy reccommended this and it works out much better. We only have to worry about the coil now. The microphone is securely fastened to Isaac's shoulder. That works out best for Isaac. The times we have the most problems with the coil staying attached is in car seats and high chairs. But you learn to adapt. After only 3 months of hearing, Isaac will hold his coil when it falls off his head and run over to me and stand still until I put it back on. He knows he can't hear without it. That is amazing to me. I know that people may have different experiences, but believe me when I tell you, Isaac has been walking since 10 months old and he went straight from walking to running. He is a bundle of energy.

I have to catch up with you more often! That is great he gives it to you. He sounds like such a wonderful little boy. I had the same kinds of concerns as ashleysmom. I can't imagine Victoria keeping it on either. She rips her hearing aids off now every chance she can get. I think she does it to spite us. She either waits for me to leave the room, or just looks right at me and then takes them off. I think she is testing me. I am so glad Isaac is doing well. You are going to be a great resource for advice for me and Ashleysmom.

 

[kayla123]

Victorias Mom, my daughter used to rip her hearing aids off too and she did use it as a tool to get to me too...lol, but later i learned that she did'nt benefit enough from them and that was a big part of her ripping them off her ears. She did it a couple of times with the ci but that did'nt last very long (she realized that without her ci she could'nt hear her cartoons). As for being active, sure the coil falls off every now and then but it dose'nt take the child that long to learn to put it back in place. I remember when my Kayla was younger and the coil would fall off, i would try to put it back in place and it would take me a second to find the magnet...well i guess a second was too long for Kayla, so she started to push my hand away and knew exactly where the coil went.

 

[Isaacsmom]

Kayla, I agree about the hearing aids. Isaac always ripped them out of his ears. The 3 month trial was the longest 3 months I remember. We even lost a hearing aid somewhere in a field outside and have not found it to this day! We have quite the opposite experience with the implant. Isaac will ask (in sign) where his implant is when he wakes up from a nap. He will point to his right ear and make the sign for "where". I show him the implant and he makes the sign for "yes" with a huge grin on his face. It really goes to show you that if a child is benefiting from technology, they will accept it and like it even!

 

[ashleysmommy]

I am glad to know that when they realized what the implants were doing they asked for them or put them back themselves. I hope I have the same good results from Ashley. She rips her HA's out too. Like some of you she gets nothing from them so that could could be part of it. Once she gets that they(her implants) help her I hope she keeps them on.

 

[Lillys dad]

The coil will po off constantly. Sometimes it seems like it will just pop off for no reaseon! (not really). You get used to it, they get used to it and they start putting it back on themselves. Trust me, I would rather deal with the coil popping off instead of the constant tugging and whistling Lillys HAs.
We have used and plan on keeping with the body worn. We have had good luck with it and plan on modifying our set up to accomidate the new ear. I guess it just goes to show, different strokes.........

 

[ashleysmommy]

I hope Ashley picks up on that quickly. She adapted to her glasses pretty fast. Most days she lets them stay on any way. We have new big girl glasses that we pick up tomorrow. Her new glasses are more Ci friendly. We hope any way.

 

[momtotoes]

Erin is mostly pretty good about keeping the coil on.

Like Issac and Lotte, Toes wears the BTE processor instead of the body worn. But we pin the unit itself to her clothing, though two hairbands wrapped around the BTE.

That being said... we do have pop offs in the car seat, while rough housing with Daddy, etc. But normally we just pop it back on and all is well.

In the evenings, she has started a game where she rips the coil off, and runs just out of our reach. She does the "Come here" motion with her hands as though challenging us to come and try to put it back on. We find it best to have another toy to distract her away from the game when we put the coil back on. Otherwise she'll play the "Take off and have Mom or Dad come get me" game for hours.

It is so funny!

 

[LuciaDisturbed]

momtotoes, your daughter is SO cute in the picture!

 

[Cloggy]

As said elsewhere in the topic, Lotte has them on her shoulders. Two little bags with the BTE's in it (picture on her blog).
We have used that the last 2 year. (Whe we got the BTE's I cut off fingers of gloves and used these..)

After a while the child will put them back by her/him self. But in the beginning, with Lotte, she would not be bothered. As if she didn't notice. It just showed she's comfortable without sound as well.
Nowadays, she puts them on herself. She wants to have contact with the rest of the world.

Yesterday she can to our bed (in the morning) with the CI's already on. However, she herself noticed that the batteries were empty, so she brought us a new battery-pack and told us to change them.
Good Morning... Wonderful !!

 

[ashleysmommy]

We are going with the Med-El and the Baby BTE processor. I liked that one because it clips to their shirt. I am sure as times goes bye Ashley will come to realize that she needs her implants to hear. Then she may learn how to put them on by herself. I can't wait. I am nervous and scared but excited at the same time.

 

[Hear Again]

We are going with the Med-El and the Baby BTE processor. I liked that one because it clips to their shirt. I am sure as times goes bye Ashley will come to realize that she needs her implants to hear. Then she may learn how to put them on by herself. I can't wait. I am nervous and scared but excited at the same time.

The emotions you are experiencing are completely normal. (I felt the same way before both of my surgeries!) I'm sure other parents on the board can identify with your feelings.

It might take some time, but eventually Ashley will learn to associate her CI processors with sound. I participate on a listserv for parents of children who have CIs and many of them have reported that their children pick up on this rather quickly. I'm sure it will be no different for Ashley!

 

[Victorias mom]

Victorias Mom, my daughter used to rip her hearing aids off too and she did use it as a tool to get to me too...lol, but later i learned that she did'nt benefit enough from them and that was a big part of her ripping them off her ears. She did it a couple of times with the ci but that did'nt last very long (she realized that without her ci she could'nt hear her cartoons). As for being active, sure the coil falls off every now and then but it dose'nt take the child that long to learn to put it back in place. I remember when my Kayla was younger and the coil would fall off, i would try to put it back in place and it would take me a second to find the magnet...well i guess a second was too long for Kayla, so she started to push my hand away and knew exactly where the coil went.

I think Victoria isn't getting enough benefit either, and that is why she takes them off. Just my opinion. Plus I think she really hates the molds in her ear.

I hope she does better with the CI. It seems your daughter as well as the others who posted got over taking it off, so I assume she will too. She is so strong willed, you never know with her!!

 

[kayla123]

I think Victoria isn't getting enough benefit either, and that is why she takes them off. Just my opinion. Plus I think she really hates the molds in her ear.

I hope she does better with the CI. It seems your daughter as well as the others who posted got over taking it off, so I assume she will too. She is so strong willed, you never know with her!!

Kayla hated her earmolds too. I remember when i thought the same as you about whether or not Kayla would keep her implant on. Kayla and Victoria sound so much alike. Kayla was also and still is a strong willed child. It is her way or else! lol. It's definately much easier now with her as she has gotten older and that she can express herself verbally instead of going into her tantrums like she used too. I'm sure Victoria will do just fine and the fact that she is strong willed will prove that.

 

[kayla123]

We are going with the Med-El and the Baby BTE processor. I liked that one because it clips to their shirt. I am sure as times goes bye Ashley will come to realize that she needs her implants to hear. Then she may learn how to put them on by herself. I can't wait. I am nervous and scared but excited at the same time.

Hear Again is right, all those emotions are normal. The one thing i can tell you from my own expeirence from my own daughter is that you will need patience. I remember when it came to activation day i was so nervous not knowing what to expect. The audi did let me know ahead of time not to be discouraged if Kayla did not respond to sound at first. You wait so long for that day and sometimes there is no response at first, as in Kayla's case. It probably took about a good month after activation to see any kind of responses from Kayla, but from that month on it was amazing to see and hear her progess. From the first time she reacted to her name being called to saying her first word which was meow...lol. Thats when you realize all that therapy and all that hard work you put in is becoming a reality. So again just be patient, the day they are activated they are like newborn babies, they need to understand that sound has meaning before reacting to it.

 

[Victorias mom]

Kayla hated her earmolds too. I remember when i thought the same as you about whether or not Kayla would keep her implant on. Kayla and Victoria sound so much alike. Kayla was also and still is a strong willed child. It is her way or else! lol. It's definately much easier now with her as she has gotten older and that she can express herself verbally instead of going into her tantrums like she used too. I'm sure Victoria will do just fine and the fact that she is strong willed will prove that.

They do sound very much a like! Thanks for the encouragement! I really do think she will do well, so we will see. Just a funny side note... the other day I had to yell at my 5 year old son, and Victoria was just watching me. All of a sudden she took her hearing aids off... maybe she heard me and said, I don't want to hear that!! It was just so funny. I think she definetly heard something, who knows what! She is starting to respond to sounds, but you have to be right on top of her, and it seems inconsistent to me. I just can't wait for the day I can stop questioning.. did she hear that??? I am sure you know what I mean.

 

[deafdyke]

think she definetly heard something, who knows what! She is starting to respond to sounds, but you have to be right on top of her, and it seems inconsistent to me

Auditory nereopathy maybe? Maybe she has a cental/cortical loss. Maybe her nervous system is beginning to start processing sound. I know that with AN hearing losses can fluctuate majorly.....

 

[ashleysmommy]

Ashley would do the same. At times it would seem she heard something and then nothing. It has never been consistent. She will let her HA's stay on her ears but she pulls the mold out. They will be dangling there sometimes and she will be playing with them. Ashley has always had a temper. In the NICU the taped a sign above her bed that said "Drama Queen". They would even leave instructions to other nurses on how to take care of her. Some nurses would request another assignment if the found out they had her. It was too funny that this tiny little baby could be so feisty.

 

[Cloggy]

Auditory nereopathy maybe? Maybe she has a cental/cortical loss. Maybe her nervous system is beginning to start processing sound. I know that with AN hearing losses can fluctuate majorly.....

Or pehaps she's deaf and would benefit tremendously from CI.....